We're So Excited

Can you just see the joy in his face???

Max and his classmates had a surprise visit from Santa during his school's holiday party. He was the most excited of the whole bunch. He kept looking over at me and shouting, "Uhm-ma (Mom), Santa's here!" I couldn't believe just how excited he was. It was absolute fun to witness.

We are planning a trip to Seattle for the Christmas holidays. We will be driving up from southern CA and hope to make it there in 2-3 days. We are so looking forward to just being in a different place for a period of time, having some new experiences and sharing time with my family. So, if I don't have a chance to post before our departure, I just want to wish all of you....

Merry Christmas!
and a Joyous Holiday Season.

Just Having Some Fun

When Max started preschool this past January, he wouldn't touch the blocks, let alone be interested in actually taking the time to build something. Well, last week I "caught" him sitting intently, putting this together. When he was finished, he started a countdown..."Ten, nine, eight....zero....blast off". Then he looked up at me and said, "Look, it's a rocket!" Wow, was I impressed!

"Would you like some oranges? It's my new favorite food."

"Here, Jozey, have some more....."

Giving Thanks....For All Of You!

Thursday was a Day of Thanksgiving and I wanted to post, but didn't get the chance. So, today, I take a few minutes just to let you know how thankful I am to have this circle of cyber-friends in my life.

Thanks for reading, thanks for sharing and thanks for being a part of my life!

In Gratitude,
Heesun

Finally...Pictures!

Okay...so it took me a while to figure out how to post photos. But, now that I know how to do it, expect to see many more!

Yep! I'm four years old!

Just hangin' out, watching The Wiggles.

And, don't forget about baby sister.

November 10th, 2003

The following is an excerpt from a journal entry on the day my twins, Max and Zoey, were born.

You've arrived! After my last entry, there was a flurry of activity. Around 8:30, we put the monitors on and I was having more contractions. Around 10 am, I got a shot of Breathine (to slow the contractions), went back on magnesium sulfate and got a catheter. No more bathroom privileges for me. The combination of the two meds slowed my contractions somewhat, but I was still having them...and they were becoming more and more painful. My OB came by just after your daddy left, and as I was talking with her I had a very painful contraction.

She decided to increase the magnesium and went out of the room to write up the order. My nurse was helping another patient, so another nurse came in to adjust my I.V. around 1 pm. Mommy had a gush of bleeding while the nurse was in the room, and this was followed by several more gushes. The doctor was nearby so we called her back into the room. The flurry of activity was impressive. Dr. L did an exam, which a bled through, and announced that the two of you were being delivered TODAY!

The nurses got me ready for an emergency c-section, called your daddy and we were moved to the OR......

Zoey, you came out first, at 2:30 pm, weighing 1 lb 11 oz (765 g) and measuring 12.5". You were next, Max, at 2:31 pm weighing 1 lb 9.5 oz (725 g) and measuring 11.5". WOW !!! Each of you had an entourage of doctors and nurses waiting to take care of you. Mommy was still sedated, so I didn't see you right as you were born; but daddy did. And he filled me in on the details, later. You two were wisked off to the NICU.

Mommy cried a lot for you today...and for me, too. I was very scared, but I knew I was in good hands.

Daddy brought me pictures of you about an hour ago. Oh my precious, precious babies. You need to fight! We have many challenges ahead of us! Right now, the two of you are on a machine to help you breathe, and you are receiving your nutrition through a tube. You also have I.V.s on your little hands, just in case. Mommy hasn't been able to visit you yet, but daddy has, and he describes how little you are and tears fill my eyes. Please be strong!! Please fight!! I will come see you tomorrow and though I won't be able to hold you for some time, I will be able to touch you! Will you recognize that its Mommy touching you?

Please fight, little babies! Please fight to get stronger and grow! Daddy and I love you...and we need you! You've come so far, and we are so proud of you. We want to be able to take you home and have you be a part of our lives with joy and happiness. We want to be your parents -- your Mommy and Daddy! Every hour you live is another hour closer to being able to hold you in my arms. I love you!!!

Happy Birthday Zoey! Happy Birthday Max!

That Darn Reflux

As I've mentioned in previous posts, Max has severe GERD (Gastroesophageal Reflux Disease). He had a Nissen Fundoplication just before discharge from the NICU, and was also given a g-tube so that we could finally go home. He's relied on his tube for nutrition ever since, although he did have a solid oral eating phase for about six months in 2005. Unfortunately, he was not able to consume enough calories by mouth to sustain his weight, let alone continue growing as needed.

Last year, right around this time, Max's reflux episodes (which are characterized by severe choking, gagging and wretching, eventually vomiting really thick mucous) were becoming very frequent and so severe that he was experiencing difficulty breathing. The mucous was just so thick and so abundant that he would have trouble catching his breath, and start turning an awful shade of purple/blue/red. So, we landed in the ER of our local Childrens Hospital, then were admitted for observation. After several x-rays and consultations, it was determined that the quickest way to relieve the symptoms would be to place a gj-tube (a tube that threads through the stomach into the jejunum, the upper part of the small intestine). By bypassing the stomach, it would have a chance to rest from all the wretching, and it would prevent any chance of aspiration. The disadvantage of j-tube feedings is that the jejunum can not handle large volumes, so Max was on more or less a continuous feeding schedule. We were doing well with that, and after 6 months, the GI docs suggested we slowly begin to wean him back to a more physiologically appropriate feeding schedule of 3-4 bolus feedings a day, through the g-tube. After a few months on that type of schedule, we removed the gj-tube, and replaced it with the familiar mic-key g-tube.

Max had been doing really well, with only an occasional episode here and there, usually triggered by lots of laughing after a feeding. We'd have maybe 3 or 4 episodes in a month. Well, over the past couple of weeks, we've seen a dramatic increase in episodes, more like 3 or 4 PER DAY! It's incredibly uncomfortable for him and very worrisome for us. I'm hoping that by decreasing his overall volume and slowing down his rate, we can get over this hurdle. We had been noticing that his respiratory system seems more taxed recently, too (we've had some terrible fires in this area -- southern CA -- and, though we were never in imminent danger, the air quality has been poor for quite some time). There must be some relationship between his respiratory issues and his GI issues.

I'm not sure what we'll do if the symptoms persist. We have some "wiggle" room to continue manipulating his g-tube feeding schedule, even to the point of doing some portion overnight. Ah, well, we'll just have to cross that bridge when we come to it.

Reunion and Remembering

Tomorrow, the NICU that was home to Max and Zoey will have its annual reunion. We've attended for the past three years, and each year, we see more and more babies who have survived; but oddly fewer and fewer of those from our group. It's an exciting time because we have a chance to catch up with the doctors, nurses, and respiratory therapists who were instrumental in our care. And, they, in turn have a chance to see how Max is progressing. We are incredibly fortunate because Max is doing so much better than any of the doctors and nurses thought he would, considering his fragile beginnings...and yes, the brain bleed (a grade 3/4). But, I often wonder where the children are who are NOT doing so well. In the past three years, we have not seen one child in a wheelchair. In fact, all of the children we've seen, with the exception of Max, were moving about appropriately for his or her age. I would imagine that families whose children are not doing so well choose not to attend, and that saddens me because these children deserve celebrating too.

We have a fondness for our NICU (and, yes, I do consider it OUR NICU) because it was the only place outside my womb where our twins were together in life. It is the only place where people outside our immediate family and close circle of friends knew our daughter, Zoey. In fact, besides my husband and myself, the nurses and doctors got to touch her and hold her more often than anyone else. And, because Max was a NICU resident for so long, many of the nurses are now close friends of ours. It is with them that I feel most free to talk about how much I miss our daughter.

Sunday, October 21st, is the 4th anniversary of the day that I was hospitalized after a routine perinatologist appointment because I was dilated and effaced (in preterm labor) and I didn't even know it! Three weeks later, Max and Zoey were born via emergency c-section because of a placental abruption that required immediate delivery. Max's placenta was tearing away and he was going into distress.

So, over the next few weeks, I anticipate being flooded with memories, and emotions that I can't quite place. Then I'll remember what time of year it is....

Expectations

A couple of weeks ago, I set up a parent-teacher conference with Max's preschool teacher. School has been in session for about a month now and I wanted to get his teacher's opinions on how Max is doing, generally. Max started the program in late January of this year, and we've seen great progress, most noticeably in his communication/speech. And, because this is a program primarily for kids with orthopaedic handicaps, the teacher is incredibly knowledgeable about how to facilitate movement with the end goal being independent mobility. She has been a tremendous resource for me in terms of understanding what Max's needs are in the areas of gross and fine motor skills, more helpful than his therapists have been. And it is usually during our conversations, short or long, that I gain new insights not only about my son, but also about myself as a parent of a child who has CP.

Here's the most recent one: ever since Max started crawling (just before his second birthday), we've been pushing for him to walk. By "we", I mean myself, my husband, physical therapists, doctors. Our thinking was simple, "Now that he's crawling, the next step is obviously to get him up on his feet." What we didn't take into account is all the incremental milestones that need to be met in order for him to be strong enough to even consider taking steps.

What his teacher, and watching my daughter, have taught me is that Max will "walk" in his own time. Of course our hope is that he will eventually be able to walk independently, with or without some assistive devices. But, it will be when he is ready; not simply because we will it to be so. When Jozey started walking independently, there was never a question in our minds that she would, so we just let her do what she needed to do to learn about how her body works. We've never done that with Max. With every new functional skill achieved, we've kept pushing and pushing for him to get to the next one, without realizing that he needs time...time to get used to this new skill and make it his own, before he's open to a new experience. I have been imposing MY timetable on his development, rather than allowing his development to progress organically. Certainly, intervention IS important, and necessary. Early intervention is why we are where we are today. But, there has to be a balance between intervention, and allowing Max to be a kid and enjoy what he is capable of.

Max has been pulling to stand quite easily, and now is strong enough that he cruises furniture and is even making attempts to stand without any support. Of course, we're thrilled! But, what's more significant is the look of satisfaction and pride on his face when he does these things alone -- without coaxing, without someone standing over him telling him to do it. Every so often, I'll hear his voice from the kitchen saying, to no one in particular, "Look, I did it all by myself!"

Back To School

So, Max started back to preschool earlier this month (is September almost over already???). After a 5 week summer break, he seemed quite excited to return to class...and to his beloved teacher, Mrs. "B". I had neglected to tell him, however, that the campus would be quite crowded as all the kids were returning, and there would be lots of activity all around him.

We actually arrived at school a few minutes early, but just as we pulled into the parking lot, Max had one of his signature "episodes" of gagging, choking and vomiting up mucous. It was quite unpleasant for him. I cleaned him up, and put him in the double stroller, alongside his sister. Well, that was a mistake. When faced with overwhelming sensory input for which he is unprepared (kids screaming, sirens blaring, etc), Max will start to hit the closest person to him. (Yes, he has some sensory issues.) So, as I'm pushing the stroller closer to the drop off location, he's getting more and more anxious. When we arrive, he's had it and begins to hit Jozey. I should have seen this one coming. The teacher greeted him with an enthusiastic "Hi Max"; but when he continued to hit his baby sister, she pulled him out and issued a time out.

Max burst into tears, of course, and started calling for me. I couldn't help but feel so guilty for leaving him there. But, I knew that once he was in class, he would be fine. His behavioral outburst was a reaction to the overstimulation. Nonetheless, I was worried about him all morning, until one of the assistants called and told me he was fine.

So that was the first day...and he's been fine ever since.

But, that begs the question, where is the line between encouraging "bad" behavior and responding to a cry for help because he's overwhelmed? I know that hitting is inappropriate; but I don't believe he does this out of any malice. It seems to be a physiological response to some sort of sensory input, usually related to sound. (Another example, we were at a birthday party where a balloon burst. Max got noticeably upset and started hitting; fortunately my husband was holding him at the time.) I know Max's brain is wired differently from Jozey's, or from any typical kid for that matter. But, does that mean we can't retrain his brain to respond differently? More appropriately?

Any thoughts???

A Not-So-Typical Outing

I have this underlying philosophy that it's important for Max to have as many typical experiences as possible, even with his limited mobility. To that end, I recently took both kids grocery shopping. It was the second errand of the morning, so the kids were getting antsy. I should have known better than to push two errands in one morning. But, I thought, "Oh, this will be quick and it's still early...". As usual, Max insisted on sitting in the seat section of the shopping cart, relegating Jozey to the cart section. Usually, this isn't a problem. But, at this particular store, the shopping carts are on the smaller side so as to better navigate the aisles. As soon as I put Jozey in the cart, she was picking her leg up to climb out. That was the first clue that this was going to be a bit less manageble than I had hoped.

Then, after I got the kids settled in their respective places, I noticed that the back left wheel of the cart was slightly bent and not working very well. This was causing the cart to veer towards the right, unless I pushed with both hands. And, as soon as we got into the store, both kids wanted out! Jozey kept lifting her leg to climb out; and Max was complaining because he couldn't get the seat belt fastened. The closure end of the belt was stuck, and there was not way I could get it out without taking him out of the seat. As I'm trying to explain to him that the belt is "broken", Jozey is continuing her attempts to climb out of the cart. I try to appease her by going to the front of the car and she immediately puts her hands out and says, "Up". When I refuse, she starts to wail and screams even louder, "Up!". I cave and take her out. Of course, that means holding a writhing toddler because if I put her down, she's going to bolt for the nearest breakable. So, I'm holding her as Max continues to whine about the belt, his frustration level increasing by the second.

A manager of the store walks by and hears me telling Max that the belt is "broken" and offers to help. (He must have noticed the frustration on my own face at this point.) I explain the problem, and he is kind enough to pull Max out of the seat and asks him to stand.

Manager: "Okay, buddy, you stand here."

Me: "Oh, he doesn't stand yet."

Manager: "Oh...."

Then I proceed to fix the belt while he's holding my son's arms.

Me: "Okay, it's fixed now."

The manager gently picks Max up and places him in the seat, but the braces make this a bit awkward. Max has to have his legs just so in order to get his feet through the leg openings. I talk him through it and he gets settled. Max immediately buckles the belt, then looks at the manager with a huge grin and says, "Thank you". The manager smiles at him and says, "You're welcome, buddy." I thank him, too and we continue on our expedition. After a few minutes, I notice the same man walking towards us, this time with two balloons tied to a shopping bag. With a gentle smile, he offers the balloons to the kids, gives them high fives and goes about his business.

We were in the store another 20 minutes or so, but I didn't see him again during that time. I wanted so much to thank him again for his kindness. He did more than distract my kids, he offered us a few moments of peace amidst chaos and that was enough to transform the experience from a chore to an adventure.

If I Knew Then What I Know Now

For the past month or so, Max has been pulling to stand and making some attempts to cruise. His standing has improved tremendously; he feels more solid when he stands and seems less fearful than he once was. We have, of course, been encouraging him to do more of the same and praising him when he does. And, we are grateful that he is motivated to move his body in this way.

But.....here's the dilemma. Because I have a typical child, who is younger than Max, I see how typical movement is supposed to progress. (It was just when Jozey started pulling to stand and starting to walk that Max was much more motivated to do the same.) Her movements are not only fluid, the progression of movements is different. I notice that Max actually relies on his spasticity, the high tone in his legs, to pull himself to stand along furniture. For example, the right foot (and he usually leads with the right) starts to come in, then the left foot points and the left leg stiffens and pushes his body up. He doesn't put alot of weight on that right foot, the leading foot. So, while the mobility is there, my concern is that he continues to rely on abnormal motion patterns to achieve the end result. And, so I wonder, is that beneficial to him in the long run? And, if not, how do we break him of the abnormal pattern and help him move his body in a more normal pattern? (Right now, we've resorted to constant verbal cues to keep his feet flat, push with the right foot, stand tall, etc all in an effort to reinforce the more typical movement patterns in the hopes that his brain will eventually "get it".)

I've been posing this question to his therapists and to his pediatrician. The consensus seems to be that, for now, any mobility is a positive thing. We could try botox to release the tight muscles so that Max has to use the weaker muscles for mobility. But, the disadvantage there is he might not have any mobility, and though it would be temporary, it would be highly frustrating. Another opinion is to allow him to continue to use whatever mobility he has with confidence and, once he's older, explain to him about his strong muscles and his weak muscles and how he has to start using his weak muscles.

When Max first came home from the NICU, he didn't move much. His first movements were actually manifestations of his CP, although we didn't realize it at the time. Typical infants do a bicycling with their legs; it's a very natural movement. Max would pull both legs in, then kick them out, like a frog, with toes pointed inward, head arched back. That is not natural; but being first time parents, we were thrilled with this movement. Back then we should have started the exercises with him that would mimic that bicycle motion.....but we just didn't know. And, now, as I watch my son struggling to take steps, I keep asking myself if I could have done more? What could I have done differently?

I realize I can't change the past, and that I need to work within my present reality. But, it would be nice to have a glimpse of what I could be doing NOW so that one year from now, two years from now, I'm not asking myself the same questions.

8 Random Things About Me

So, I've been tagged. I don't know if any of these will be of interest, but here goes:

1. I love the way the air smells after a summer downpour. I grew up on the East coast (Maryland, to be exact) and I desperately miss thunderstorms and rain falling so hard you can barely see out the window.

2. I played basketball in 6th and 7th grades. My 6th grade team was called the "Strawberry Shortcakes" and we won our division championship. There were exactly 5 girls on each team, and we just played each other, as no other schools had a 6th grade girls' team. The irony is that all the girls on my team were really short, including the coach.

3. I thoroughly enjoy reading Anne Tyler novels because the characters are very human; and she always sets her stories in my home state.

4. When I was a young girl (around 6 or7) I had an imaginary daughter named Jessica. I convinced my little girlfriends to have imaginary daughters too, and we would spend our recess making imaginary clothes with bobby pins for our little girls.

5. I always knew I wanted to be a mommy.

6. I love Maryland steamed crabs. My brother and I used to live off crabs every weekend during the summer months. Yummy!

7. John Denver's music and lyrics warm my heart and soothe my soul.

8. My name "Heesun", when written out in characters, means "Bright Hope". (I'm Korean.)

So that's it for me. Now it's my turn to do the tagging. I tag Angela ,and Stacy for now. I'll have to add others a bit later....

Good night.

Thoughts on an Outing

We went out to dinner last week (a very rare occurrence for us, but this was a special occasion). Max had been wanting to use his walker all day, so when we arrived at the restaurant, he insisted on taking his walker inside with him. We obliged. And, as we were being seated, I noticed several patrons watching us with great interest. And, as we happened to be seated at a table, rather than a booth along the sides, we were easily observable. Several times throughout our dinner, I noticed people glancing over, their eyes drifting to the walker, then to our family, then back to their fellow diners. It appears that a walker that small is quite a novelty in public.

When dinner was over, Max chose to use his walker rather than be carried out of the restaurant. Mind you, Max is a very slow walker, and he hasn't quite mastered steering so he tends to bump into things, and people. So I made sure to stay fairly close to him in order to avoid any major collisions. As we were walking by tables and patrons waiting to be seated, several people stopped in their tracks and made comments such as, "Oh, how cute!" or "Look at him go!". All very positive and very encouraging. One little girl noticed Max as she was getting out of her own car, and was very curious about his braces and his walker. Without hesitation, she asked, "Why does he have those on this legs?" I explained that he has trouble walking and they help to support his feet. Then she asked about the walker. I gave her a similar explanation. Then her father, who had been standing very close by, chimed in, "And he's doing a great job, too!"

What I found interesting about this outing was people's reactions to my son's physical challenges. In general, they all seemed very positive. But, my mind began to fast forward to when Max is a teenager, or a young adult. What if he still needs a walker, or crutches, or even a wheelchair. Will people have similar reactions, or will they simply smile and avert their gaze? I'm guessing it will probably be the latter, because even I have done this. But, why? Why is it that a small child with physical handicaps can elicit a warm response, while an adult elicits avoidance?

My son has taught me to be much more aware of those around me who have any form of disability, and to meet their eyes without fear, but with openness and understanding. And I am grateful for that. But, why was I one of those people who chose to avoid, rather than embrace?

Differences

My daughter, Jozey, is 13 months old today. For months now, we've been trying to figure out how to get her to sleep through the night. No luck. She wakes at least twice, sometimes even more often, and nursing seems to be the fastest way to get her back to sleep. The challenge is I need sleep, too. So, inevitably, I end up bringing her into our bed, nursing her and falling asleep. That means, if she starts to stir, neither my husband nor I get much rest....and she's the only one who wakes up refreshed.

When Max was about 17 months old, we spent a week or so, teaching him to fall asleep on his own. Until that point, it was a daily ritual to rock him in our arms ( a ritual my husband particularly enjoyed) until he was in a deep sleep. Then we would lay him down, and he would be out for the night. But we were beginning to notice that it would take longer and longer for him to fall asleep. We realized that he was probably forcing himself to stay awake because of our company, (and because we were rocking him in the living room, with the television on...yes, we were that naive). So, while my husband was away on business travel, I instituted a sleep schedule for Max. I would put him down for his naps, after a ritual of one book and slow rocking. I would leave the room and he would cry...and cry...and cry. I forced myself to let him cry for up to one hour, then I would rush in and get him up. And, we'd try again for the next scheduled nap. After a week or so, the duration of crying decreased and by the time my husband returned from his business trip, Max was able to soothe himself to sleep. As a result, at the age of 3.5, he's a pretty consistent sleeper and is able to fall asleep on his own about 90 percent of the time.

Now, my daughter is another story. One would think that, since she's the 'typical one', we'd have no problem allowing her to cry it out and get her on a better schedule. But, here's the glitch. She's never really had a schedule. From her early weeks of life, her schedule has revolved around her brother's schedule. She would come along to every appointment imaginable. And, if she fell asleep in the car, well, that would be her nap. Once we got to an appointment, she was sure to wake up. Here we are, at 13 months of age, and she still takes her morning naps in the car, after we drop Max off at preschool. She naps anywhere from an hour to hour and half, then we run errands. I try to get her to take another nap in the afternoon, at the same time Max does, but that's always touch and go. And bedtime is a very long, extended affair.

So, knowing this history, does it make sense to let her cry it out? Isn't it to her benefit to learn how to soothe herself to sleep? What is it that's preventing me from using the same method I used on her older brother? Is it my need to comfort her because I realize that during the day, she gets shortchanged for my attention? At 3.5, Max still needs a great deal of help with dressing, eating and toileting -- stuff that a typical 3.5 year old would be doing on his own by now. And, whenever he shows an interest in standing or walking, I make it a point not only to encourage him, but to be right there supporting him, literally. So, honestly, Jozey gets somewhat neglected. And, she makes it known that she doesn't like it! Recently, she has started to race after me if I leave her to help Max with something, and grab on to some part of my body. I suppose she's trying to tell me that she needs attention, too.

So, late at night, when I am finally able to give her some undivided attention in the form of nursing her back to sleep, I can't help myself. And, I wonder, how much of this is for her, and how much is for me????

The Team

A few years ago, my son's occupational therapist at the time, who herself had a son with special needs, offered these words of wisdom: "Get your team together -- those doctors, therapists, caseworkers etc who will collaborate with you in helping Max reach his potential." It took me a while to understand, and to fully appreciate, those words.

Max sees several specialists on a regular basis. In addition to his pediatrician, he is also followed by a gastroenterologist, a neurologist, an opthalmologist, a pulmonologist and a surgeon. He currently receives OT, PT and Speech, on a weekly basis, as well as feeding therapy. When Max became sick this fall, and required rehospitalization (for the first time since NICU discharge), we chose to be admitted to Childrens Hospital LA. And, it was at that time that my husband and I decided, with our pediatrician's support, that we would transfer the majority of Max's specialists to Childrens Hospital. And, in so doing, we were creating our team of doctors who could work together to address Max's somewhat complicated medical needs. (Our pediatrician, who we absolutely love, likes to use the phrase "He has too many issues to go anywhere else....")

So we have this medical team; but in addition to that we also have a wonderful group of therapists who are involved in Max's life on a weekly basis. These people have had an incredible impact on Max's development, and have greatly improved his quality of life. while doctors sometimes have a tendency to see only the diagnosis, or the immediate medical concern facing them, these therapists continue to treat my son as a whole child, and that is such a blessing.

But, of all these people, I would have to say that the people who have been the most significant members of our team have been Max's special ed teachers. The teacher from his early intervention program is now a family friend, and continues to be involved in Max's life. I credit her with Max's very early enjoyment of "school". Through her use of sign language, she helped Max develop confidence in his ability to communicate his needs through sign. For me, Max's ability to communicate offered a glimpse into his mind and that was of great comfort.

His current teacher, a wonderfully gifted woman, has offered me the opportunity to witness a different side to my son's personality. With her guidance, understanding and insight, I am beginning to see a more mature little boy; one who is capable of reaching out and having his own special relationships with significant people in his life.

Thank you, one and all, for reminding me that I am not on this journey alone!

Happy Birthday Jozey!

My younger daughter turned one on June 1st! I can't believe how quickly this year has passed; and how much she has changed in just 12 short months. She's pulling herself to stand and using several signs to communicate. She loves to play with her big brother and she has a delightful personality.

It's so different having a typical child after having a preemie. She's just so healthy....and low maintenance.

What an amazing year it's been for all of us! Jozey has grown into this fiercely independent almost toddler who adores her big brother. Max has really embraced his role as the older brother, and takes it upon himself to inform me when his baby sister needs a diaper change and that she should have crackers and juice too.

I have been quietly observing this blossoming relationship between these two, and have loved every minute of it. It is pure joy to watch them interact; and the way my daughter's face lights up when she sees her brother.....oh my! It warms my heart.

Thank you, my beautiful children, for choosing me to be your mommy! I love you all!

Be"longing"

I was at a local park the other day with my younger daughter, just around lunch time. She had been stuck in her car seat for most of the morning, running errands and napping. As she is on the verge of walking, she loves any and every opportunity to move around (what typical almost one year old doesn't?). I was not used to seeing such a large crowd, since we typically go early in the morning. Anyway, there were babies everywhere, from about 8 months to 3 or 4 years. A couple of moms were using the bucket swings to feed their younger children, and there was a large blanket laid out next to a bench, with lots of snacks spread out for the kids. Apparently, it was some pre-arranged play group. And, as I observed the scene, I felt this sense of longing creep into me.

I had no desire, really, to talk to any of these women. Their lives seem so different from mine. I overheard a conversation about taking toddlers to see a show, and that seemed so foreign to me. My son's days are filled with preschool and therapies. My daughter's schedule revolves around my son's schedule. And my life revolves around the two of them. I try to provide my kids, my son especially, with as many typical experiences as possible. But, usually, these experiences need to be planned well in advance; but, there are only so many "free" days.

I longed for the innocence of motherhood without the trauma, without the loss, without the challenges of infertility. Of course, I know nothing about these women, nothing about their lives or what challenges they may have. I know only my reality....and that is far too much. I know that getting pregnant takes more than just talking about it. I know that getting pregnant is no guarantee that you'll stay pregnant, nor that you will deliver a healthy, full term baby. I know that babies die. I know that I can never know the future.

McDonalds

Max started feeding therapy at Childrens Hospital Los Angeles. We've gone for two sessions now, and each time, we found ourselves making a stop at the McDonalds which located on the first floor. Therapy starts at 2, but we're usually there early. This way, Max can use his wheelchair to get himself around and, like most 3.5 year olds, he likes to wander and take his time. He's quite social, so really enjoys wheeling himself up to complete strangers and saying "Hi" with a sweet voice and a wave. Anyway, we usually have at least a half hour before our session, so we typically make a stop at McDs so that I can get some coffee and a snack for my younger daughter, who by then is really hungry. I get the same order each time: 6 piece nuggets, fruit & walnut snack, and a drink. Well, it turns out my son really likes apples....or, I should say, he likes the idea of apples. He can't quite eat them yet, but he loves to pretend to bite down and chew the crisp pieces. (His feeding therapist suggested we put the apples in some organza and allow him to have the experience of biting and chewing, without the risk of choking on the pieces.)

Well, all this is just background for what happened today. I picked Max up from school, and as I was settling into the driver's seat, I hear him calling me from the back. The conversation went something like this:

Max: "Uhm-ma (Korean for "mommy"), McDonalds!"

Me: "McDonalds? Why do you want to go to McDonalds?"

Max: "Want to get some apples to eat."

Me: "Apples? You want apples from McDonalds?"

Max: "Go to McDonalds. Get some apples to eat."

I couldn't believe my ears! I had just had a full conversation with my son, without coaxing, without prompting, and without initiating with questions of my own. This is the first time...for both of us!

So, of course, after that, we had to stop at McDonalds. Way to go, Max!

Tired

I am by nature an obsessive compulsive person. I admit that, in general, these tendencies have served me well. And, with my son's current medical and physical challenges, once again these obsessive compulsive tendencies have helped me to meet his many needs. For example, Max is on a very regimented medication and feeding schedule. The medications are time sensitive, and his feedings are rate/volume dependent as he continues to rely on tube feedings for nourishment. I keep a daily log that includes time, meds, feedings, diapers and any observations that might be relevant to how he's tolerating his feedings. I have notebooks full of daily entries that date back to the day of his discharge from the NICU, over 3 years ago! Give me a date, and I can tell you how much he "ate", how many diapers he had, when he slept and whether or not he was "sick". And, on more than one occasion, I have referred to these detailed entries when providing medical history for my son, especially with GI related issues.

But, there is a down side to this obsessiveness. I am exhausted. I am exhausted physically, emotionally, mentally. I feel as if I can't decrease my level of vigilance because, if I do, I might miss something...even though I don't know what that something is. When Max coughs, do I dismiss it as "just a cough" or is it a symptom of something more troublesome, something that could lead to another hospitalization, or take us down a path of no return? It's very different with my daughter, who was born full term and has, to date, been extremely healthy. I don't worry when she has a cough or a runny nose. I also don't worry about how much she eats, or what she eats. I trust her. I trust that she'll eat when she's hungry, drink when she's thirsty, and her immune system is strong enough to fight off whatever may come her way.

Ultimately, my obsessiveness is an attempt to have some control over the uncontrollable. Perhaps that is why I'm so tired...because I know that no matter how vigilant I am, I can not guarantee that my son will not get sick, that he won't have to struggle, that he won't continue to face the challenges that are the consequence of his extreme prematurity.

We Are Grateful

A couple of months ago, when my son started to show an interest in eating again, we made it a point to sit at the table and have our dinner together. We start our meal with the same ritual, a brief prayer: "Dear God, we are grateful. Amen." Every so often, in the rush of getting the kids settled, appeasing my younger daughter who is frantic from hunger, we inadvertently take a bite or two. Max immediately stops us by shouting "We are grateful....we are grateful...." It's his way of letting us know that we need to say grace.

And so we stop...we hold hands...and we say our prayer of gratitude. And, in so doing, we are reminded of just how fortunate we are.

We were in the ER this past weekend...actually, two ERs. The first ER trip was due to our concern that Max's feeding tube might be harboring some type of infection because he was experiencing fevers and the tube site was oozing. X-rays showed that all was well with the feeding tube; but he might have a possible pneumonia. We were discharged on amoxicillin and told to follow up with our pediatrician. On Sunday, Max's fevers continued and while we were treating with Motrin and Tylenol, we decided to take him to the ER when it peaked at 105.3! This time, we went to the ER where my kids were born. The ER docs, therefore, have my son's complete medical history at their immediate disposal. After assessing him, the ER doc concluded that he was probably fighting some type of viral infection and we could continue to treat him at home. So, we came home feeling relieved that there was nothing more to be done than to wait it out and allow his body to fight this bug.

The fevers have disappeared and he's doing much better. But the reason for mentioning this adventure at all is the fact that the ER doc actually called us the other day to follow up! He left this message asking how Max was doing and to give a call back to the ER if we had any questions or concerns. I was very pleasantly surprised....as well as touched by his thoughtful gesture. When I returned the call, the nurse informed me that he was not even on duty that day; he had just come in for a brief time. The overwhelming gratitude I felt towards this doctor, who would check up on us on a day that he wasn't even scheduled to work, brought tears to my eyes. Yes, we are grateful!

Choosing Guardians

I've been sick for a few days now...sick enough to be bedridden for almost 24 hours. I'm the kind of person that prefers to push through any type of illness and just keep on going. So, you know it's bad when I need to stay in bed for 24 hours. Being bedridden gives me a glimpse into just how much I take my health for granted. I know I don't get enough rest. I know my eating habits are worse now than when I was in college. I know I need to get more daily exercise. I know all these things will help prolong my life; and yet I take it for granted that, regardless, I will live for many years to come and will see my children graduate from college, get married and begin families of their own.

But, what if? What if something were to happen to me? To my husband? To both of us? What about our children? Recently, my husband and I have revisited the discussion of who would be guardians for our children should we both pass away. While uncomfortable (I mean, who wants to think about the possibility that you won't be around to watch your children grow into adulthood), it was rather easy. We were in agreement on our choices for guardianship. I have had the good fortune to marry a man who has five younger sisters, three of whom had children before we did. And, even before we had our own children, I felt a kinship with one of my sisters-in-law's (SIL) mothering style. That is the sister we chose as our primary guardian for the kids. She and her husband have three children of their own, ranging in age from six to twelve.

I spoke with my SIL a few nights ago just to remind her of the discussion and ask again if she and her husband were agreed on being guardians. We will be signing the official papers soon, and I wanted to make sure that they had both taken into consideration the possibility that Max will have some long term special needs/challenges. He could still be on a feeding tube. He may not be walking yet. He will continue to need various therapies. But, they had indeed discussed these possibilities, and were agreed that they wanted to accept the responsibility. My SIL even joked that she would quit her job to be there for Max, in whatever way he would need. (I actually think she's serious about that.)

I am so very grateful to know my children will be well cared for and loved beyond measure. The mere idea of not being here for my own children can keep me awake some nights, gripping me in fear. So I have to keep reminding myself that there ARE other people who love them. Of course it won't be the same as mommy and daddy; but these precious babies will not lack for love from grandparents, aunts, uncles, cousins and close friends. And for this, I am very blessed.

Holding Back Tears

We were getting ready for school this morning and, as usual, we were in a rush. In order for us to get to my son's preschool on time, we need to leave by 7:40 at the latest. I thought we were doing fairly well for time as we were able to get out the door by 7:40 on the dot. But, just as we were leaving, I noticed my son didn't have his braces and shoes on yet. So, I carried those out to the car with me while my husband carried our daughter. Both settled in their car seats, I started the process, for it is a process, of getting my son's braces and shoes on his feet. Max wears DAFOs (Dynamic Ankle-Foot Orthosis) to improve stability and break up some of his high tone due to cerebral palsy. In order to get the braces on properly, both he and I need to be in good positions -- i.e. me directly in front of him so that I can make sure his foot is placed properly. Needless to say, trying to put the DAFOs on while he's in his car seat is a bit trickier because we're at right angles to each other. So, it takes a little longer...so much for getting to school on time.

Once the braces were on, his feeding pump began to beep signaling that the programmed dose had been delivered. (Just to give some background here, Max had a g-tube placed before discharge from the NICU almost 3 years ago. He never got the whole suck-swallow-breathe process and, after 5.5. months, that was the only obstacle to his coming home. So, we made the decision to place the tube during surgery for a Nissen fundoplication -- to address reflux -- and work on the feedings at home.) So, he's had this g-tube for years. Recently, back in November, it was changed to a gj-tube because his reflux symptoms were getting so much worse, even on medications. A trip to the ER at Childrens go us admitted for a week. X-rays indicated that the fundoplication had slipped, suggesting that he might require surgery. My husband and I were not convinced that that would solve the problem. We insisted on waiting and having additional tests done so that we might rule out some other possibilities. In the meantime, in order to decrease the risk of aspiration, we decided that j-tube feedings would be a good idea. (A j-tube empties directly into the jejunem, a portion of the small intestine, thus bypassing the stomach altogether. The patient still gets the nutrition he needs; but the stomach has a chance to rest from the trauma of continuous reflux.)

So, he has this gj-tube, which has been working out very well for him. One annoying problem, however, is that the j-tube port will sometimes come "unplugged" while we're using the g-tube port, causing some of its contents to flow out of the tube. There is a distinct odor to this fluid, reminiscent of sour milk mixed with bile. When I pulled up his shirt to pull out the tubing, I noticed that the j-tube port had come unplugged and there was a very wet patch on his undershirt, as well as his t-shirt. He couldn't go to school like this, so I went back up to our apartment, got a new shirt and changed him in the car.

This is wear the title comes in. I noticed as I was changing him that I had this lump in my throat and I was very emotional. I was frustrated that, yet again, we were going to be late. But I was also very sad for my son who has to endure the discomfort of wearing DAFOs, of having a hole in his stomach and just generally all the handling that takes place when a child has a physical disability. I was overwhelmed with a need to cry, but felt it wasn't appropriate to do so in front of this sweet boy who brings so much joy to our lives. He puts forth so much effort daily to execute the most seemingly simplest of tasks. Compared to what he must endure, my own emotions seem selfish and trivial. Of the two us, I think my son is more justified in his tears.

And, yet, I have these moments of holding back tears and I realize that I am still grieving. I grieve for what could have been, should have been.

Full Circle

In high school, I thought it would be a great idea to volunteer as a candy striper (that's what we called student volunteers back then). Selfishly, I also thought the experience would look good on my college applications and help introduce me to the medical profession because, at the time, I thought I wanted to become a pediatrician. My assigned area was "Child Life". It was a new area (this was the early 80s) and an attempt to address the emotional and psychological needs of these very young patients who were chronically ill and had long hospital stays. (Most recently, my son was hospitalized -- his first since NICU discharge -- at Childrens Hospital in Los Angeles and they had a play room for the kids, staffed by professionals. It reminded me of those early days.)

What strikes me from that experience is the fact that I was assigned to the Peds Neurology floor, and I interacted with children who had challenges such as hydrocephalus, seizure disorders, CP, and other traumatic brain injuries. I remember thinking how challenging it must be for the parents of these children to lead normal lives. And, here I am now, 20+ years later, with a child who has CP and a brain injury. And, I regularly come into contact with people who forget that he's a child, first and foremost and his challenges are only a small part of who he is as a person.

When I think back to that experience, I think to myself that perhaps I've come full circle. I always wanted to be in the medical profession. My life took a different turn during college, and I did not pursue medical school; but here I am now, with intimate knowledge of my son's medical needs and dealing with medical professionals from various disciplines on a regular, sometimes too frequent, basis.

I am beginning to appreciate, though, this cyclical nature of life's journey. It reminds me that even to the most difficult challenges, there will be an end and there will come a time when the challenges are less daunting. Endurance seems to be the key; endurance and peace.

The Power of Language

In a rare husband-wife moment (you know, those brief intervals between putting the kids to bed and doing the dishes before you can get yourself to bed), my hubby and I were talking about our son. Until recently, we have never used the word "disabled" to describe our sweet little boy. We've used terms such as "delayed" and "special needs". The word "disabled" evokes such negative images that we simply do not associate with our boy. But, the fact remains, disabled is what he is. At 3.5 years of age, he does not eat, he can not dress himself and he is unable to walk. These physical limitations most definitely impact the experiences of his day to day life, and ours as well.

This increased sensitivity to my son's physical challenges is most likely sparked by the ease with which my younger daughter is hitting her milestones. She started crawling last month; first a few tentative rocking movements, then full on reciprocal crawling within days. My son was almost 2 before he started to crawl. In watching her development, I better understand how my son's physical limitations have impacted his development. And, this makes me sad. He struggles. His body doesn't move with ease; he must make a conscious effort to turn his waist, or sit with his legs crossed in front of him, or out to the side. We are constantly reminding him, cueing him, to put his body in certain positions in order to facilitate overall body awareness and strength so that, one day, he will be able to walk. But, my daughter just does it. Her body naturally gets into these positions, and I am awed. I think "My, she's precocious."...but really, she's just typical. And that's when it became clear to me that my son is disabled.

And being able to say this actually makes it easier to accept him for who he is. It's really a flaw in my own thinking, I suppose. When I think of "delay", I think of something solveable, something that can be fixed. My son doesn't need fixing. But, he does need to learn how to live with his physical challenges in a way that allows him to participate fully in the world around him. Sure, he'll continue to get PT, OT and Speech, as well as feeding therapy (because, let's face it, eating is one of the great joys of life) so that he might lead a more typical life....but he will never be "typical". His traumatic start has guaranteed him a life full of "atypicalness".

Title

When I was in college, there was a support group called "special survivors". It was for those of us who had lost parents. We would meet in one of the members' dorm rooms every few weeks and just get together and talk about our lives, how we were coping, how the death of a parent had impacted us. There were those of us who had recently lost a parent, and others who were further along in their journey through grief. And, while I attended only a few meetings, I definitely appreciated the support and comfort of knowing that I was not alone.

At this point in my life, there is another layer of meaning behind the title "special survivors". It no longer refers to me alone, but rather to my husband, and to my children. My son is a survivor, in the very literal sense of the word. He survived an extremely traumatic early birth. His twin sister did not. My twins. Zoey and Max, were born on November 10, 2003 at 2:30 and 2:31 pm respectively via emergency c-section. I was only 26 weeks pregnant and had been in the hospital on bedrest and tocolytics (to stop contractions) for 3 weeks due to signs of preterm labor ( I didn't even realize I was dilated). At exactly 26 weeks, my son's placenta abrupted and within an hour of the abruption, the babies were delivered. I had to be intubated and put under general anasthesia because the epidural was not working fast enough. My husband was by my side the entire time, describing everything that was happening. My daughter, Zoey, was delivered first and she let out a tiny cry. She was rushed over to one of two neonatal teams. My husband was able to see her for a moment before she was intubated due to respiratory distress (she wasn't able to breathe on her own). My son, Max, was born the very next minute, breech. He, too, required immediate intubation. Both babies were rushed to the NICU before I even woke up from the anasthesia.

I met my babies for the first time the day after they were born, a Tuesday morning. I remember being wheeled into the NICU and seeing these tiny little beings, completely exposed, completely vulnerable, attached to IVs and monitors, with tubes going down their throats. It was overwhelming. They were beautiful; but at the same time, it was so obvious that they were not supposed to be outside my body. We were told by the docs and nurses to expect an emotional roller coaster; that only time would tell. We were told that the first few days were critical, then the first few weeks. We heard it over and over again, this is an emotional roller coaster and we have to take it one day, one hour, at a time.

The next morning, when my husband and I went to visit the babies, the neonatologist approached us and gave us the news that Max had a grade 3 IVH (a brain bleed). Brain bleeds are graded on a scale of 1 to 4, with 4 being the most severe. My daughter had a grade 2. The doc told us he was sorry to have to give us such bad news. The next morning, a second cranial ultrasound revealed the Max's IVH had progressed to a grade 4 on the left side, and again the doc said he was sorry. As I write this, I am reliving some of the emotions of that moment. Here we had two precious babies in critical condition; but we were told that my daughter was doing okay while my son was fighting to survive. In fact, his very survival was questionable. During those first two weeks, we were told to prepare ourselves for the possibility that Max would not survive. He did!

Over the next several weeks, both babies underwent surgeries, blood transfusions and numerous blood tests. (My son still has scars from all those pokes and IVs.) Both babies 'stabilized'; but remained critical. My son's brain bleed did not progress and he never required any intervention for the IVH. After a month or so, I asked one of the docs if she could give us some indication of wether or not we'd be able to bring the babies home. We were told that it was likely, provided neither baby suffered any severe infections. Within a few weeks of that pronouncement, both babies started to come down with infections. We were told "this is typical" because the immune systems of preemies, even full term newborns, is quite fragile and underdeveloped. Both babies had several rounds of antibiotics. At about six weeks, Zoey became syptomatic of an infection that had spread to her blood, her spinal fluid and, yes, her brain. My daughter, who was considered the stronger of the two, the one most likely to come home with us, was dying. She passed away on January 9th, 2004, 8 weeks, 4 days, 6 hours and 35 minutes after her birth.

Max remained in the NICU another 3 and a half months. He had two eye surgeries for ROP (retinopathy of prematurity) and stomach surgery for severe reflux (Nissen Fundoplication and G-tube placement). Our survivor was discharged on April 16, 2004 after 158 days in the NICU.

Fast forward to today. Max is a happy, inquisitive almost 3.5 year old. He relies on crawling as his primary mode of mobility and, until recently, employed sign language to communicate with us. He has recently started verbalizing more, a direct result, I believe, of the special ed preschool he attends where he receive OT, PT and Speech. While he still relies on a feeding tube, we are hopeful that he will eat by mouth one day. We are also hopeful that he will walk, but as with everything preemie related, time will tell.

So, as our story of survival continues to unfold, I am drawn to the possibility there are others with whom I can share the journey.